April 9, 2024
2 Year 1 Mo Post BMT
Dental was a bit of a dream experience. We live in a medical world. We’re 1 of thousands of sick kids seen in a culture that is medicalized. Sometimes it’s hard to be seen as an individual. This was a normal dentist office that sees healthy kids. With that and this visit came an extra dose of empathy and patience and just pure gentleness and a desire to understand. For an hour, we felt something different. We’re always cared for. There is always kindness. But it was like being wrapped in a warm blanket at a time that we desperately needed it. Such a great experience to feel genuinely cared for and loved after weeks of feeling so dismissed. Tate will have everything fixed at Children’s North, by this dentist, in May. All huge wins. SO grateful! Tate will get to see Lauren and Pringle. We’ll have an anesthesiologist that knows her at a facility we trust implicitly and no added medical trauma. Thank you to Children’s Dentistry and Dr. Sean in Westminster
Yesterday we saw Tates pain Dr and had her pump meds exchanged and refilled. This is done with a long needle that accesses a diaphragm, through her skin, into a reservoir in the implanted pump. It hurts, but is quick and really isn’t much worse than the years of mediport access she’s had. But the trauma that comes with all of these medical things is building. She struggled with a panoramic dental X-ray because it triggered a feeling of a brain mri. To try to explain the why behind the emotional response behind trauma is impossible. Trauma response is not a fear response. It’s irrational. And it’s exhausting. It creeps out at the most surprising times. Tate will work through what comes with this pump as the benefits outweigh any negatives. Our pain Dr. is wonderful and is always thinking of Tate and adjustments to help. We continue to see pain shift and progress. It’s hard to know currently if things are exacerbated solely by disease progression or viral components. The next med to add is expensive and comes with more potential side effects, so we’ll wait a few weeks to see where things land with the increase a few weeks back of rheum meds and clearing this virus and the increase yesterday.
Palliative….its funny how something you dread is a blessing God provides that you wish you would’ve had forever ago. They’ll be a great addition and probably could’ve prevented a lot of heartache in the last two years. But…they are here now and although the conversation prompted some tears, I’m grateful. Much focus is on quality of life.
The photo memory from two years ago popped up. It was Tates 100th day in the hospital and I was thinking we should celebrate like in kindergarten. Really just looking for some joy. Tate was very sick yet at this point and not having it. “So I got myself a vanilla latte. ” I include this because I asked palliative how other families do this type of life. The day in, day out, weeks, months and years of constant daily struggle, unknown future while trying to paint on smiles and create happiness. And she said it isn’t easy, but just how you are. You find joy in the moments….In a latte. In a beautiful song. In free tickets and seeing your lilac bush bloom. In the small picture. I think we’ve been doing this for years. Some seasons we’re better at it than others.
It’s Spring here. The sun is shining, the birds are singing. The trees are blooming.